Ichthyosis Awareness Month 2017: what awareness really means

The beginning of May marks the beginning of Ichthyosis Awareness Month – and before you glass over, let me assure you I realize how uninteresting that sounds at its surface.

There are thousands of these “awareness” days, weeks and months, aren’t there? And so many of them have absolutely no personal impact on our lives.

But in actuality, what these events do is create an opportunity for us – an opportunity to reflect on our own lives, and the lives of those around us. An opportunity to think about how we can connect and reach out to others, how we can show that we care, and how we can truly love each other.

Even when we can’t fully understand what another person is experiencing, we can care. We can lean in to them during whatever journey is lying in front of them, or has happened behind them.

Instead of looking at titles, labels, appearances, headlines – very surface pieces of life – we need to try to look deeper at the stories. It is through our stories that we find meaningful relationships and true points of connection.

You may hear “Ichthyosis Awareness Month” and let that title quickly pass through your mind. But it is my hope that when you read our family stories, you realize how similar we are to your own family, how similar my feelings as a mom are to your own feelings as a parent or grandparent, despite perhaps vastly different situations.

When you read about a father’s tender acts of hair care for his daughter, it is not about “ichthyosis awareness” but rather about the kind of unconditional love that we all recognize and feel for our babies.

When you read about me wishing for other parents to build bridges instead of walls when they encounter our family at the park, it is not about “ichthyosis awareness” but rather about a mother’s hope for kindness and acceptance toward her children.

When you read about how I am learning to step back and let my daughter handle some of the public reaction to her skin, it is not about “ichthyosis awareness” but more so about a mother trying to instill confidence, self-love and an assurance in finding identity in Christ for her daughter and son.

It is my hope that we can all learn to lean into each other, to connect as we walk together during these seasons and recognize the value of each other’s stories and experiences in creating a beautiful life!

In Years Past

If you’d like to learn more, I’m rounding up some of my past Ichthyosis Awareness Month projects…

In 2013 (four years ago – wow!), I’ve shared more in depth about the genetics behind a recessive genetic disorder like H.I., and covered other issues related to this severe skin disorder, from nutritional demands to temperature concerns to susceptibility to infection.

In 2014, I did a four-part Q&A series, where I answered questions about our daily routines and daily life caring for a child with ichthyosis. I received questions from what steps we have taken to ensure Brenna stays healthy when we leave the house (since she is susceptible to bacterial skin infections), to questions if Brenna’s bath hurts her, to inquiries about Brenna’s prognosis and if she will “grow out” of her condition, to what my pregnancy with her was like.

In 2015, I showcased a “Day in Our Life” in photos, to give a glimpse into what our typical day might look like, from a long bath to therapy and other general family activities… I covered posts about our morningbath time and afternoon/evening.

As I mentioned above, I’ve always believed that sharing stories is how we can best educate other people – sharing about our experiences that others haven’t experienced themselves helps us all. I’ve been honored to host many beautiful stories of love and redemption and God’s grace, including:

When Nicole and her family chose to adopt a beautiful baby with Harlequin ichthyosis

How the only family in Ireland to have a child with Harlequin ichthyosis is thriving

When Stephanie Turner shared about becoming the first woman with HI to have children (and we continue to think of Stephanie, often very tearfully, since her unexpected death two months ago. She has forever changed our family, and I’m grateful to have her personal words to carry on her legacy and share her generous love.)

 As always, I’m so grateful that by using story, through this blogging platform, I can offer a beautiful face to a condition that you have probably never heard of and might still not even be able to pronounce, and that perhaps you might become invested in reading, despite this condition having no direct effect on your life. 

What can you do? You can educate your children. You can tell your families and your friends that there is a skin disorder called ichthyosis and it’s not a sunburn or contagious; it’s something that thousands of people live with every day. And there are many more conditions, disorders and physical/mental/emotional differences, and you can instill in the people you love that we are all made different and that should be celebrated. But it should not detract from our sameness and the respect we show each other because of our shared humanity.

Rare disease receives very little funding. So if you are so moved, we would be honored if you would consider making a donation in Brenna’s name to our foundation, Foundation for Ichthyosis and Related Skin Types (also called FIRST), with whom we work very closely.

Happy May and Happy Ichthyosis Awareness Month.